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BEING MORTAL: MEDICINE AND WHAT MATTERS IN THE END

By Atul Gawande
New York: Metropolitan Books, Henry Holt and Company, 2014
ISBN: 978-0-8050-9515-9
282 pages

Bob Corbett
February 2016 At the outset of his book Atul Gawande cites what he thinks is a critically valuable insight in Leo Tolstoy’s THE DEATH OF IVAN ILYICH.

“What tormented Ivan Illich most was the deception, the lie, which for some reason they all accept, that he was not dying but was simply ill. . .”
This leads Gawande to his central thesis: Modern medicine has fundamentally changed the nature of death. At the same time it has created a situation that radically separates the notion of health care as “healing” and health care that only keeps a patient “alive” no matter the cost in every possible sense of “cost.” Atul Gawande argues that there has been a dramatic change in the health care and living situation of most of us from the late 20th century, and that most of us are not fully prepared for the change. The living situation that he sees changing is two-fold:
  1. For many centuries the largest mass of the elderly had lived with their children’s families since:
    • They typically didn’t have enough money to support themselves after they could no longer work.
    • Thus, once they became weaker and less firm and healthy, they had to rely on their children for their basic necessities and ability to even go on living.
However, Gawande argues that there were two major changes that came from the very late 19th and early 20th centuries that changed this century old pattern:
  1. The nature of work relations changed and social support changed. People began to earn more money, to have pension programs from work and government, and various other government health plans and retirement plans became very common, thus, for the first time in history, large numbers of the elderly tended to have some income, often at least a moderate amount that would allow them to live alone.
  2. Further, the dramatic developments in health care in the later 19th and early 20th century tended to leave people alive longer

Gawande argues, however, that between B1, the economic security of the elderly eventually, comes into conflict with a key result of B2 – the increase in health care – that more and more elderly are outliving their assets, and doing so at a time when their ability to care for themselves is outstripping health developments that simply cannot sustain independent life styles any longer.

Thus, he argues, we of the early 21st century are facing a crisis of life, health and death in which many elderly are caught in a terrible bind: health care can keep them TECHNICALLY alive, but the quality of that life is in essence, not worth living.

The question then is: how is society to solve and change this growing crisis of the elderly and their later days. Many face two sorts of difficulties:

  1. They are able to be kept “technically” alive.
  2. Yet the quality of that life dramatically declines even raising the question: is this sort of life really worth living? If not, what is one to do? What is society to do?

I think I was a fairly typical person who sort of ignores this question in their young and healthy days, and by the time the question becomes pressing, one is already into the age of when it is a real issue and I, like so many others, am not really prepared to face the question, or face the music, as we say.

However, I was sort of jolted into this question earlier than many. Two major issues brought this about for me:

  1. The first happened in the mid-1960s. I was then a very young professor of philosophy at Webster College (which was in a couple years to become Webster University). A scholar from MIT came to offer of sort of summer challenge to faculty and to have some discussions of aging and dying. He was Jerry Letvin and his week-long “institute” for THIS faculty member and at least one other, was life-long.

    After Professor Letvin’s lectures I received a phone call from a member of the art department who had also attended Letvin’s series and he said we needed to talk, would I go floating with him in his canoe on one of Missouri’s small streams and we could talk. He was clearly flustered and disturbed, so I quickly agreed. Off we went in his psychedelic painted hearse with his canoe on top.

    We spent a couple days on the river talking about: “Once we can live on and on and on when and how does one decide to die?” That was our question. We didn’t get very far with answers, but both of us were quite aware of the problem. I’ve had this issue on my mind ever since.

    The second issue was more anguishing. My mother died a very quick death in 1993. In 1994 my father was very weakened by a blood illness and slowly his ability to care for himself at all came to the fore. He had to go every couple weeks to his doctor to receive an infusion of blood since his blood was not replacing itself as a body would normally.

    He became weaker and weaker and less and less able to care for himself. My two brothers and I all lived very close to Dad’s home and we did our best to take turns being with him and helping, but it bothered Dad more and more than he could do less and less for himself. Finally we boys decided we needed to get some help into the home to care for him at his own home. The day we had some folks come to the house so Dad could talk with them we were about to finalize the deal for this one woman to be a live-in helper much of the time.

    However, my father wanted to talk with me, his oldest son, about this. When we went off to chat he asked me why I just didn’t do it for him. “Do what?” I naively asked. He indicated that he was ready to die and hated this slow process and he was so ready to go “and be with his Lou” (my mother). I was taken aback but gently explained to him that

    1. I didn’t know how to “do it.”
    2. It was illegal. Since I had been very active in various anti-war activities and such in the 60s through the 80s and had often been arrested for various acts of civil disobedience he just said: “Getting arrested for other issues has never stopped you before, and you’re a bright fellow, you can figure out how to do it.”

    I was really caught, but I answered truthfully: I could most likely do both, figure out how to do it, and would not be frightened off by the laws. However, what I simply COULDN’T DO was directly bring about my father’s death. I’m not sure he ever understood that, nor, really do I.

    However, this issue of the end of one’s life after one’s life quality has gone out of it has been an important and central area of my thinking and planning my own life. Yet, here I am in my late 70s and still have no realistic plan of how my own ending will come about.

    Thus, when one of my daughter’s pointed out this book to me, both my partner and I were anxious to get the book and read it. Thus began my reading of Atul Gawande’s work.

    An entirely “new” relationship between the old and the younger generations has developed in recent years, mainly enhanced by increasing longevity.

    The notion of retirement with income was another factor in changing attitudes. Many elderly want their independence.

    “Given the opportunity, both parents and children saw separate as a form of freedom.”

    The dilemmas are: EVENTUALLY illness or infirmity is likely.

    “We’re always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not miracles of biological luck but reasonable expectations for all.”

    In sum:

    “. . . the advances of modern medicine have given us two revolutions: we’ve undergone a biological transformation of the course of our lives and also a cultural transformation of how we think about that course.”

    However, many of us, like Sally, my daughter Janie and me, are thinking that this newer “model” is flawed.
    Ironically, old age in humans, now often beyond 80, is not a part of human history.

    “Remember that for most of our (humans) hundred-thousand years existence – all but the past couple hundred years – the average life span of human beings has been thirty years or less.”

    Aging today “. . . is not so much a natural process as an unnatural one.”

    The modern notion of “the hospital” with many of them in almost any area was a new innovation beginning in the U.S. in about 1946.

    1983 the first “assisted living” facility opened in Portland, Oregon. The author makes assisted living sound like a much better option than other alternatives. Is this really the case?
    Psychologists have sought to find universal drives in people to help understand them. The author disagrees with the famous theory of Maslow’s view in his important work “A Theory of Human Motivation.” Rather Gawande argues:

    “. . . our driving motivation in life, instead of remaining constant, changes hugely over time and in ways that don’t quite fit Maslow’s classic hierarchy. In young adulthood people seek a life of growth and self-fulfillment, just as Maslow suggested . . . When people reach the latter half of adulthood, however, their priorities change markedly. Most reduce the amount of time and effort they spend pursuing achievement and social networks . . . They focus on being rather than doing and on the present rather than the future.”

    Gawande is consumed with the notion of assisted living, at least in the original version of it when it was established by Keren Brown Wilson. He believes it is the best current model for the aging.

    However, today, the original notion of assisted living has often been watered down.

    “A survey of fifteen hundred assisted living facilities published in 2003 found that only 11 percent offered both privacy and sufficient services to allow frail people to remain in residence.”

    Dr. Bill Thomas, as a young doctor, came to the conclusion that “I was confusing care with treatment.” He was somewhat influenced by philosopher Josiah Royce of Harvard who, in 1908, published “The Philosophy of Loyalty.” His thesis was “. . . a cause beyond yourself” is an intrinsic need.

    A key thesis of Gawande’s book is that the problem of ageing is not really a medical problem or medical issue. Rather, it is a question of meaningfulness and how to achieve and maintain it.

    The difference between standard medical care and hospice

    “. . . is not the difference between treating and doing nothing . . . The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now – by performing surgery, providing chemotherapy, putting you in intensive care – for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now – much as nursing home reformers deploy staff to help people with several disabilities.”

    Gawande also offers a list of 8 activities which he things are essential as to whether or not a person can really operate on his or her own – his list of minimum criteria for independence:

    1. Shop for yourself
    2. Fix food
    3. House keeping
    4. Laundry
    5. Do your own meds
    6. Phone
    7. Travel
    8. Handle finances

    Steven Jay Gould is one author who prefers to always fight against death.

    “It had become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light”

    In the U.S. deaths at home in 1945 were a clear majority. In the late 1980s it was down to 17%. By 2010 45% died in hospice, of those ½ were at home, and ½ in institutions.

    Later in the book Gawande personalizes the discussion in a touching manner. He deals with his own father’s aging and ultimate death. His father was also a physician. This section of the book was quite touching and informative.

    On endings!

    “Inevitably, the question arises of how far those possibilities should extend at the very end – whether the logic of sustaining people’s autonomy and control requires helping them to accelerate their own demise when they wish to. ‘Assisted suicide’ has become the term of art, though advocates prefer the euphemism ‘death with dignity.’ We clearly already recognize some form of this right when we allow people to refuse food or water or medications and treatments, even when the momentum of medicine fights against it. We accelerate a person’s demise every time we remove someone from an artificial respirator or artificial feeding. After some resistance, cardiologists now accept that patients have the right to have their doctors turn off their pacemaker – the artificial pacing of their heart – if they want it. We also recognize the necessity of allowing doses of narcotics and sedatives that reduce pain and discomfort even if they may knowingly speed death. All proponents seeks is the ability for suffering p people to obtain a prescription for the same kind of medications, only this time to let them hasten the timing of their death. We are running up against the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives and giving them the right to stop the natural, internal processes that do so.”

    He also writes:

    “As a person’s end draws near, there comes a moment when responsibility shifts to someone else to decide what to do.”

    I remember well that in the emergency room with my own mother, the intern told Dad, shall we try to resuscitate her, she’s nearly gone. Dad made the decision. He said: “No, she wouldn’t want that.” And that was it. Of course we were very sad, but I so respected Dad for this strength and his decision.

    While Gawande can’t quite embrace a direct and conscious notion of voluntary suicide with a doctor’s help, he realizes that much of common practice is fairly close to assisted suicide if not even more overt.

    “As a person’s end draws near there comes a moment when responsibility shifts to someone else to decide what to do.”

    I believe it is that last notion that I most dislike. I would like to hold that responsibility solidly in my own hands, and only hope that as the time came close to where I wouldn’t be able to reasonably exercise that right, I would choose to have my life mercifully but quickly and painlessly end in the manner and time that I chose.

    This is a very useful book. It lays out the current situation of the end of life debate very clearly and explores several of the key lines of discussion that occur within this debate. Atul Gawande doesn’t really come down with a clear position of his own. Rather, he explores many lines of life choices and moral questions and lines out many different lines of challenges and replies. I think many people, especially those who are reasonably healthy, yet aging and beginning to see the onset of the end years, would find in BEING MORTAL a set of explanations and questions which would spark them toward being able to sketch out a decision that would fit their own person and moral choice.

    I was surprised that the internet has not entered into Gawande’s discussion. It seems to offer an enormous range of meaningful connections to the elderly who can manage it.

    Despite this quite minor quarrel, I found Gawande’s book to be a very useful mass of information and a significant challenge to the current medical situation of end-life decisions.

    Bob Corbett corbetre@webster.edu

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    Bob Corbett corbetre@webster.edu